Living with Tuberous Sclerosis Complex (TSC) - Focus on Seizures

This survey aims to collect information about experience of seizures in people living with TSC or caring for someone with TSC.
This information is being collected by Tuberous Sclerosis Australia (TSA) to assist in the preparation of a submission to the July meeting of the Pharmaceutical Benefits Advisory Committee (PBAC). At the July meeting, the PBAC will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC and experiencing seizures that do not respond well to available treatments. If the medicine is approved for listing it will be funded by the Australian government as a part of the PBS.
The survey is open to people over the age of 18 years, and is anonymous and voluntary.
To answer the survey, select the option/s that apply to you or the person you care for with TSC. We welcome your additional comments as these are very useful in preparing our submission.

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* 1. Some information about you

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* 2. How does TSC affect you/person in your family? - intellectual impairment

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* 3. How does TSC affect you/person in your family? Behaviour

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* 4. How does TSC affect you/the person in your family? Seizures

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* 5. How does TSC affect you/person in your family? Tumours

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* 6. What is the impact of TSC on my life/life of our family?

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* 7. Can you describe how TSC affects the quality of life of the person with TSC and other family members?

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* 8. What are the impacts?

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* 9. Do you or the person you care for experience seizures as a part of TSC?

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* 10. Can you describe the impact of seizures have on your life?

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* 11. If you have had times with less seizures or even a time without seizures, what difference did this make?

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* 12. What would you like to see from a treatment that managed seizures?

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* 13. For you and your family, what are the most important features of medicines for seizures?

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* 14. In your experience, which treatments or medicines have been the most effective in managing seizures? (this could include surgery and diet approaches)

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* 15. In your experience and thinking about the most effective treatments and medicines, what are the problems associated with the best treatments or medicines?

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* 16. Have the seizures ever been treated with Everolimus/Afinitor?

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* 17. If you have ever used Everolimus/Afinitor, what was your experience of the benefits?

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* 18. Did any of the following occur with Everolimus/Afinitor treatment?

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* 19. Were any of the following side effects experienced when Everolimus/Afinitor was used?

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* 20. How long was Everolimus/Afinitor taken?

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* 21. If this medicine was stopped, why?

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* 22. How does Everolimus/Afinitor compare to other treatments - What's better, what's worse?

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* 23. If you have never used Everolimus/Afinitor, what would you like it to do?

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* 24. Where have you obtained information about Everolimus/Afinitor?

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* 25. As a part of TSA's submission to the PBAC, we may supplement these survey responses with interviews. Are you willing to be called for a 30 minute phone interview? If yes,  please provide your name, state, preferred call times, preferred contact phone number.

Thank you for completing the survey.


If you would also like to make your own submission to the PBAC you can do this before 7 June 2017 at http://www.pbs.gov.au/info/industry/listing/elements/pbac-meetings/pbac-consumer-comments


The TSC Information Service is a confidential service where you can speak to a member of the TSA team about anything to do with tuberous sclerosis complex (TSC), including:
  • emotional support if you or someone you care about has TSC;
  • how to manage life with TSC;
  • questions you may have about TSC, including about tests and medical procedures;
  • how to find other organisations and resources that can help you in your life with TSC.

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